Baby boomers could change Alzheimer's as it changes them

Frank Walker watched his brother die of Alzheimer's disease when he was only in his 50s.

Walker swore he would take himself out before he went through that, his wife, Marcia, said. But then the disease took its course with him, and by age 63 the promise was either forgotten or couldn't be kept.

Three years later, in 2006, the family knew it was Alzheimer's. The Lafayette resident would die in September 2012 at age 72.

"The early part of the disease was not horrible for any of us," Marcia Walker said. "He could be home alone. Four years he managed on his own. We would still laugh. We still had fun. We could still do things together."

But then it got harder.

"He slipped away really gradually. The adult becomes a child again. He was peeling off these layers of adulthood — of independence," she said. "He was like an infant at the end."

Alzheimer's has been a lonely and isolating disease for generations of those afflicted and their families. Fear of the devastating disease makes some people ignore the early signs. Once a family finally accepts that a loved one has Alzheimer's, they often want to protect that person by hiding the indignities wrought by the disease — the memory loss, the confusion, the lack of emotional and motor control.

Sometimes the fear is on the outside, and old friends stay away.

"We see both situations," said Amelia Schafer, senior program director for the Colorado chapter of the Alzheimer's Association. "Their friends stop calling. That is a reality. They don't want to say the wrong thing, so they don't say anything."

Awareness is spreading of what a heavy burden it is for any family to shoulder alone.

"Alzheimer's disease is by far the No. 1 disease that leads to caregiver burnout, even mortality," Schafer said. "It is exhausting, stressful. It affects every single part of your life.

"Most of us can shine for a month. But think about extending that level of energy, patience and strength for years."

Last year, 15.5 million caregivers gave an estimated 17.7 billion hours of unpaid care for people with Alzheimer's disease and other dementias. The Alzheimer's Association's 2014 Facts and Figures report estimates that care was worth $220 billion in unpaid work and lost wages.

Last month, Denver Broncos owner Pat Bowlen, 70, relinquished control of the football team as his family and the organization announced that he has the disease.

Experts say that aging baby boomers, with their sheer numbers and knack for self-help, could slowly lift some of the secrecy and stigma surrounding Alzheimer's.

The first baby boomers reached age 65 in 2011. By 2030, the segment of the U.S. population age 65 and older is expected to double.

"It is a generation that is reaching out more and learning more," Schafer said.

Philanthropists and politicians are realizing the impending crisis and are stepping up with more resources for chronically underfunded Alzheimer's research, said University of Colorado School of Medicine researcher Huntington Potter.

"We have the beginning of the fruits of the realization that Alz-heimer's must be solved, and it must absolutely be done with research," he said.

Potter and CU neurologist and psychiatrist Jonathan Woodcock are beginning human safety trials of one of the few promising treatments for Alzheimer's, a protein released in the brain of people with rheumatoid arthritis. They don't develop the disease.

That protein is already available as a drug whose brand name is Leukine. The product, approved by the Food and Drug Administration, is used by bone-marrow transplant patients.

As Frank Walker's disease progressed, Marcia wanted to protect him from the outside world.

"Staying home is safe and secure. He liked being home," she said. "But friends would come over and bring food and socialize with us. It was very important for us to have that."

She had much-needed support from her children, sister and employer. Frank's retirement savings paid for a daytime caregiver in their home. Marcia had nights.

"One thing I learned that meant a lot to me — I gave myself one night off a week," she said. "I would go out and do something with a friend — go to the gym, have dinner and drinks."

These "Marcia's Wednesdays" preserved her sanity, she said.

At the end, Frank's decline was rapid. He became combative and spent the last two months of his life in a nursing facility and hospital.

Most people with Alzheimer's live four to eight years after diagnosis, but many survive 20 years.

Edgewater resident Gina Hartley noticed in November that her mother, once vivacious and talkative, had become withdrawn. Over the next few months, symptoms of memory loss and confusion increased. They eventually received a diagnosis of Alzheimer's for her 78-year-old mother.

Hartley, 51, moved in with her parents to help out.

"It's a full-time job. My whole life is on hold. Caregiving is the hardest thing I've ever done," Hartley said. "But, for me, the hardest part is that my mother isn't my mother. I'm missing her."

Hartley's father believes his wife's disease is a private family matter, but Hartley is fighting the isolation. She regularly takes her mother around to coffee shops for visits with friends. And she is already planning financially for the possibility she herself will die from the disease that afflicted her mother and grandmother.

"The misconception is that the disease is only what happens at the very end," Schafer said. "Many more years could be spent still being part of the community."

Hope Kapsner said her mother became a recluse, living in isolation with her second husband. There were signs as early as 2002 that her mother, Lislott Jacobson, was in the early stages of Alzheimer's, but a diagnosis didn't come until 2010, when Kapsner stayed in her mother's home to help her recover from knee surgery and became concerned.

Her mother and her disease had been hidden away for years. After her husband died last year, Kapsner hired full-time caregivers for her mother. Jacobson can afford the $15,000 a month for top care in her own home.

Kapsner's family visits almost daily, but it's depressing, she said.

"She has a completely different personality now," Kapsner said. "It's so weird to still have her, but not be able to talk to her. She's blank."

Schafer said 15 years ago not many people were talking about themselves having Alzheimer's. That's changing, too.

"They have hopes and dreams of future, even with the reality of what is coming," Schafer said. "They want to continue living as long as they can."

Ed and Kathy Whitney of Aurora are active retirees who spend a lot of time on the golf course. Ed, an 83-year-old retired military and airline pilot, was diagnosed with Alzheimer's in 2012.

He has been very open about it with friends.

"I have nothing to hide," he said. "We just laugh about it. It's not funny. But you have to laugh or cry."

The Alzheimer's Association has been extremely helpful, Kathy said. There are support groups when you need to vent and a caregiver class that is very effective. The Whitneys participate in an association event called "Music Connect" on Friday afternoons.

"It's very joyful," Kathy Whitney said. "We try to have as much joy as possible."

In the two years since Frank Walker passed away, it has become easier for Marcia to recall all the good things.

"It's gotten easier to remember the other Frank, the real Frank," she said. "He always made people laugh. He was a great dad — very playful. He was a kid magnet."